The transformational power of love and loss

Our Story

The night before you were scheduled to come into the world I lay alone in a room in intensive care and wondered what the date of your birth would be. A few weeks in hospital and I’d lost track. I knew the current day was Monday but had no clue what the actual date was. Awkwardly reaching for my phone trying not to upset the arterial lines connected to my left wrist or the two angry IV cannulas sticking out of my right arm I discovered that your birthdate would be 11 November 2014.

11-11, my heart skipped a beat. What an incredible day to be born! The 11-11 sequence is considered to have mystical relevance in New Age philosophies. Some people believe that seeing it repetitively reminds us that our soul is awakening and to pay attention to synchronistic events. It was more than enough for me. Convinced it was an omen and desperately clinging to hope of any kind I felt a surge of comfort.

The man in the room next to mine was preparing for his transition to the afterlife. He was around 60 years old and that seemed incredibly too young to be passing. My fears kept me awake most of the night and just about every night since being admitted into hospital and so to do something constructive I spent time praying intently for him and his family in between praying for you.

I prayed that you would be ok and that we would both survive the potentially arduous 3-4 months of your residence in neonatal intensive care. Then I dared to confidently envision you and me out in the world doing everything together.

I imagined our long walks sporting our casual yet fashionable fitness gear and you in a fancy pants pram. I could see us in cafes meeting friends for coffee and I don’t even drink a great deal of coffee. In my mind’s eye, everywhere we went, strangers fussed over you like the rock star that you would be.

I knew without hesitation that you would be fair headed. You can’t escape genetics. I knew you were a boy and I knew what you would be named. Having kicked me incessantly for a month prior to this night I surmised that you’d probably have some serious strength. It was evident that you could put up a decent fight. Given that you had continued this far along when we’d been through so much already, it was clear you possessed resilience. This would hold you in good stead because a life sized battle had been laid out before you.

You’d stay awake with me through my sleepless nights and with a hand securely rested on my belly, you would proclaim your presence. The reason I could feel so you distinctly was because the placenta was in a stupid place. For your development it was far from ideal but looking back it was a tiny blessing because without it in the way I could identify your every move. Those far from gentle kicks always made me smile. I felt so close to you, beyond excited that you were mine.

The family and friends of the man in the next room moved in and out in a sombre procession. Sometimes I could hear a bit of laughter and that made me smile. The nursing staff brought in sandwiches and offered them to me also. I found that curious for two reasons because sandwiches seemed like an odd choice for a middle of the night snack and why would you need sustenance when everyone you loved was already present? That’s how I felt about you and how you had sustained me for the last 6 months. I politely refused of course. The last thing I ever felt like eating was hospital food.

The duty nurse talked to me on and off for hours and that helped to distract me from what inevitably lay ahead. The night felt like a very unrealistic dream. I couldn’t understand how a baby born at only 24 weeks gestation could survive but the experts assured me it was possible. There was a brochure and convincing statistics and plenty of success stories. It all seemed quite probable. I had to trust. Did I have a choice? I wanted you more than anything.

The following morning was big for us. Through the frosted window adjacent to the corridor I’d watched the shade change from black to light and I embraced that it was nearing time. Turning my attention to my broken body it became evident that my stomach wasn’t particularly happy. I couldn’t blame it, how much hospital food and drugs could it take before staging a full scale intervention? More than likely it was nervousness influencing my now delicate physiology. Lucky I hadn’t eaten the sandwiches. I called out to my nurse and we began the first of many trips to the bathroom. Being hooked up to a constant blood pressure monitor made my frequent visits difficult and it dawned on me that something was quite wrong.

The last visit confirmed my suspicion. Once I saw blood I knew you were reaching out and that the doctors were right. The need to leave the sinking ship was another of your survival mechanisms launching into action. It became as much your preference as it was the theirs. I just hoped you had secured your life jacket as best as you could.

After my stomach settled I was kindly prepped and fussed over by the nursing staff for theatre. It was common knowledge that our deal was rough but they acted positively and professionally and offered comfort. They must have felt it encouraging relaying positive stories of other children who had made the long journey from prematurity to graduate as a full term baby. The stories were certainly hopeful but my doubts were causing a commotion in my head.

When the preparations were complete, your dad and I waited for the theatre staff to arrive and then we made the long journey from the underbelly of intensive care to theatre. I have to be honest, by then I was terrified. I’d never felt more afraid. I thought it quite brave that I managed to arrive without any tears. Completely helpless and afraid for us both I made a futile attempt to surrender. Your dad stayed with us until he couldn’t go any further and we made the last of the journey on our own. He left us to sit in the intensive care waiting room, also quite noticeably alone.

With a lot of help to manoeuvre me with all the wires and machines I was tethered to, I shuffled across from my bed onto a skinny long stainless steel table that looked like something out of an industrial kitchen. My arms were stretched out to the sides. It appeared as though I was being nailed to the cross. It certainly felt like it. This was the sacrifice I made to prolong your life. Which sounds all very well and noble but to be honest I wasn’t given a choice.

It could have been much worse. We went through months of threats to end your life to save mine. The latest had only been a week before the day you were you born. The staff couldn’t control my ever increasing blood pressure until the intensive care unit relented and took over. Had you been born that horrible night you wouldn’t have been given life support. I wouldn’t have been given the chance to meet you and I really wanted to meet you. So we fought hard you and me and we didn’t give up. We were asked to get to 24 weeks and we got there. 24 weeks and 1 day. We over delivered. Anything less and the specialists were unable to support us. So we held up our end of the deal and secured a tiny win.

In theatre there was so much noise and the staff seemed to be talking all at once. They moved quickly and rushed to introduce themselves. They were doing their job. What was routine for them was ostracising and frightening for me. My undersized pregnant belly was exposed and the ultrasound revealed where you were hiding. The best place to create the incision was determined and my skin was marked like a whiteboard. I’d never had a stay in hospital until I’d started fertility treatment to conceive you. Now I frequented hospitals like I’d frequented the bathroom that morning and yet they still felt foreign and difficult to fathom.

Theatre was the worst part of the entire journey up until now. We were at the mercy of the staff and the Gods and you and I just had to stick to our muted lines and play our part. When the anaesthetist covered my face with the oxygen mask I couldn’t breathe. I panicked and threw it off my face. Even without the use of my hands I still managed to get free of it. I cried out and my doctor walked over. I was petrified and couldn’t stop the tears. My pretty dark haired doctor offered some kind words and promised to take care of me. But I knew I couldn’t do anything to help you. It was the most hopeless and helpless I had ever felt. Eventually I relented and the anaesthesia took effect. I was plunged into darkness.

Without me awake to witness, you came into the world at 10.34am. You weighed 460 grams and were 21 centimetres long. Babies born your size can make it to term with the help of medicine and respiratory assistance but not all. You had a lot going against you. Your tiny size for one thing. But you got on with it. After you were extracted from me you were immediately transferred to a temperature controlled humidity crib and a line was inserted into your tummy to feed you and another was inserted to monitor your blood pressure. Your daddy got to see you immediately, thank God.

You were never alone. You had round the clock nursing staff and your every move was monitored meticulously. See, I was right about you being a rock star. You had everyone’s undivided attention. When I finally woke up I was back in my intensive care room and it was apparent how separate we were. I didn’t like it. I missed the heaviness of where you had resided and could already feel my uterus contracting back to where it was before you expanded it.

After the pain killers and anaesthesia wore off I was miserable. How could this have happened to us? I tried not to let it plague me. I turned my attention to whatever I could to get through. But before I did that, I can’t lie, I felt really sorry for myself. It’s certainly not what I had planned for you. It couldn’t have been any further from the perfect birth story but it’s our story and so I embraced it. I didn’t send out a message proclaiming your birth. We told our immediate family and a few friends and knew that word would spread. It was such a difficult experience to celebrate. I felt like I had failed you.

The day after your birth was pretty rough. I had so many hormones, pain killers and medications invading my body and I was behaving pretty badly. I’m normally fairly measured but this was a lot for me to manage.

Finally in the afternoon of your second day in this incredibly complex planet I got to meet you face to face. You were in your crib by the window at the furthest corner of the neonatal intensive care wing and I was lying on my hospital bed. Everything had to be moved so that my nurse could wheel me up on my bed to see you. Your eyes were fused shut which is lucky because I was a sight. We made quite a pair. I loved the way that everyone fussed over you when I couldn’t. Your every need being lovingly and consistently met.

You had a funny pair of fabric goggles covering your eyes and a minuscule plastic cap over your ear because you were so sensitive to light and sound. Trying to mimic the womb is impossible but everything was done to ensure you were as comfortable as could be.

You weren’t moved much, only just as required. You had to have your tiny bald head turned every few hours because of the build-up of moisture. Your little cone head was achingly cute.

We spent 15 days together like this. For the most part I was in hospital with you until I was fit enough to go home without you. I’m sure you can appreciate how that felt to leave without you in my arms. It was horrible. Gut wrenching. But I concentrated on the process. We both had to fight hard for your space in this world. We knew we were asking for a lot but we had already strapped on our belts and started the ride.

You had so many nurses love you and I mean really love you. They connected with you immediately and knew how intensely special you were. You didn’t just belong to me. It was like you belonged to everyone. So many people had heard about you, prayed for you, and loved you. Church groups in other countries held services for you. It was the most remarkable event I had ever witnessed. People that knew of your birth wanted more for themselves and for others just by having known you and witnessed your life. You brought about such reverence, such hope, such love, you were inspiring and immense.

You had so much attitude and character and such a distinct way of being. Sometimes I wondered if you were actually mine or a gift to the world. I think you were both.

The day you were inserted in my uterus as a tiny embryo was a Friday. The day you arrived in my life was a Tuesday. The day your perfect little physical body decided this world was too much was a Wednesday. The Friday was wintry and raining. I don’t know what the Tuesday looked like, I never saw the light of day but the Wednesday was brilliant with sunshine and it was very still and calm. It was 26 November 2014. It was the first day I got to hold you in my arms and the last. It was the second day I got to kiss you. It was an enormous day. The doctors told me there was nothing more they could do for you after you reacted poorly to respiratory assistance. I didn’t believe what they were telling me. I just kept holding onto your little hand and head whilst watching you through my unstoppable tears and hoped that they had it wrong.

You were in your daddy’s arms when your tiny heart finally stopped beating. It was the cruellest most heart breaking moment of my life.

After we finished cuddling you I watched your nurse carefully and lovingly remove all of your lines and needles that poked and prodded your tiny form. I refused to look away so I would never forget everything about you and so that I could be sure your precious body was free from injury.

You had the most incredibly small hands and feet and they were remarkably perfect. I wanted to remember the sensation of your fingers wrapped around mine forever because it was exquisite. You were exquisite in every single way.

After your lifeless form had been held by your grandmas and grandpas and thoroughly kissed and cried over by me, we left your cold little body with the nursing staff who were also mourning you.

I have to confess to you what I immediately thought, that it was all for nothing. That I’d gone through the difficulty of invasive fertility treatment and had my health dramatically compromised, all for you to have to endure an early birth and subsequent death. It was all for nothing. I had nothing because I didn’t have you. It was the most pitying and horrible feeling.

After you left I busied myself with the tasks I needed to perform to get to the next step. I tidied the house I had hardly been in, I tended to menial jobs and I began planning your memorial. I took care of my physical health and I got on with my life as best as I could. I recorded our time together in writing thinking that might help.

Sometimes I let people take care of me. Sometimes I shut them out. I was angry, sad, guilt ridden, numb. I felt everything so intensely and thought the feelings were trying to destroy me. I’d never been broken down like that. It hurt so incredibly much.

I desperately wanted to get to acceptance so I could feel peace and so I accelerated the process. I immediately decided your life had purpose and meaning because it lined up with my beliefs. Plus, what you taught me was immense. You were the light and love of my life and that was everything.

Without realising, I pushed my broken heart aside in my search for meaning and my emotional health suffered. I learned the hard way that the only way to truly move through such a traumatic loss was to let it take it’s time and so I slowly and painfully honoured my grief in any way it chose to present.

At the funeral home before you were cremated, I took the opportunity to see you for the last time. I sat and watched you and wept as they played songs that I imagined parents would sing to their babies. I unwrapped your blanket so I could take one last look at your little perfect hands. I placed in your coffin a letter I had written, a photo of your family and a poem from your grandma. I asked the angels to carry them to you.

So this is our story. It’s not pretty and glamorous, but it’s ours.

It took me a long time to stop blaming myself for failing you. I came to be extremely thankful that even though it wasn’t long enough, you lived. Not only did you live but you served a beautiful and important purpose. You were the embodiment of love. You were and are a complete success. You will always be my first born son and a magnificent gift. Your physical presence couldn’t remain in my life yet you left a stunning legacy. You showed me a new way. You opened up my heart and eyes in a way that I will always be humbled by and thankful for. Even though a part of me will always be heartbroken that you couldn’t stay, I can accept that you lived out the life that you needed to.

I think I was right in reaching acceptance for your short existence, I just wasn’t right in assuming I had failed. You were perfect darling, perfect for the path that you danced with the lightness of an angel. You expanded my entire life. I might not carry you in my arms like I had hoped but I carry you in my heart and thoughts.

We share the same courage and the same determination as well as the same hope for a better day. We have the same goal of wanting to share an extraordinary love with the planet.

For the time we spent together in the physical world you lived your great purpose, completed your life and now you reside somewhere else. I had to let go of the opportunity of the life that wasn’t what I assumed it would be and rejoice in what was.

I know you are always with me and I know your life was exactly what it was meant to be. I honour your journey as you honoured mine and I love you to the highest degree.

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6 thoughts on “Our Story”

Thank you for sharing your story, the tears are flowing as I read your words…….so honest, so heartbreaking, so beautiful. It means the world that you see how much your little rock star taught us all. 💙

After reading this, I remember how I felt after receiving the text you sent saying your beautiful baby boy had decided to leave the earth. I was getting ready for work in which that task halted immediately and I dropped to my bed crying, saying no, no, this is not right. Consequently , I never made it to work that day. My initial sense after he was born was everything was going to be ok now- my intuition had lied to me!
Your words are raw and so incredibly soul baring, you are an inspiration to us all. That time in your life, our lives, is never too far from my loving thoughts. 👼🏻💕

Oh my love, the heartbreak you have endured is unfathomable. I have tears streaming down my face from all your pain. You are both the bravest people I know and you are such an inspiration. What a lucky baby boy to have such an incredible and special Mummy. Love and light to you darling x